Second week on 20mg trial of Prednisone
and besides not experiencing much relief from the horrific joint pains,
I have the following side effects:
-Strong stomach pains (even though I take it with food)
-Increased dry mouth
-Increased dry eyes
Why would the Prednisone make the sicca symptoms worse rather than better? :o :o :o
From what I've read dry mouth isn't one of the more common side effects. If I remember correctly it was in the incidence unknown column along with stomach issues like cramp and pains.
Unfortunately I can't help with the why, but am interested to find out myself so I'll be following.
GgcJap
I've not dealt with anything other than 5 day and 7 day treatments of prednisone. With those, and with IV/IM decadron, I did notice an increase in severity of dry eyes, but my dry mouth would get better, or at least not worse.
That's strange since I just took a round of prednisone drops for my eyes. It did help them.
It does say in the medication's pamphlet that it may cause dry mouth as a side effect
but nothing on dry eyes and I'd expect it to improve those very symptoms if it's supposed to
calm down the immune system attack.
Strangely it doesn't really seem to be helping at all at this point as my joint pains are still raging on.
I too am on 20 mgs. of prednisone!
I have gained a fair amount of weight, but am now on a strict diet and losing.
The other day, I felt "cushiony"
Hard to explain.
Like I had a layer of cotton all over my body.
I think it was water retention.
I am finding I have to eat sooooo carefully.
I do not believe I have been more thirsty though, but my stomach is much quicker to get upset.
Hang in there.
How long have you been taking the 20mg Nomad?
Any notable improvements from it?
I haven't even been able to gain any weight on it...nothing!
My rheumy said that if after 2 weeks I see no improvements I'm to stop,
so I may not be on it much longer. No use to continue if it doesn't help me.
I'm taking prednisone for low platelets. It's not helping.
It is helping all my aches and pains
It is causing weight gain
I've been on it two months
I start a teeny slow taper today ...19 mgs
Nomad- How long did it take to help you with your pains?
Sharon, I feel so bad for you. Two days after starting it, my hip pain and carpel tunnel pain were 40-50 percent better. About 10-14 days later my hip pain was gone. Shortly after that my hand pain was about 90% better and has stayed at that level. I'm nervous about reducing since I suppose those pains might come back. It helped my blood platelet level very briefly and not nearly enough.
Thanks Nomad, we all respond differently I guess.
Still have a few days till the 2 week mark so who knows...maybe something will yet change.
I do know that many sustain improvements for awhile after tapering,
so hopefully coming off the Prednisone won't be too bad for you.
So sorry to hear about the side effects Sharon. I just did a round of Medrol last month (I don't tolerate prednisone well). It helped some and I think my mouth was more moist rather than drier.
We all respond differently to drugs. Have you informed the doc who prescribed the drug about the stomach pains? I would be most concerned about that symptom.
Thanks SjoGirl, what side effects did you have when you took Prednisone?
I wouldn't mind the side effects as much if it actually helped with the pain which is now my most debilitating symptom.
I can't get a hold of my rheumy without an appointment. I'll inform him my upcoming appointment.
I really just want him to prescribe a biological drug but it isn't happening.
Prednisone is known to be very hard on the stomach and gastric tissue. It can cause gastric irritation, ulcerations, ulcers, and bleeding. If you cannot get a hold of your Rheumatologist, maybe you should see or get a hold of your PCP so he/she can order something for your stomach.
When I was on high dose Prednisone for systemic vasculitis, I was on Cytotec from the very beginning as a prophylactic against the gastric irritation. It worked. I never had any problems. My mother, on the other hand, was on Prednisone and no med to prevent gastric irritation and she developed a bleeding ulcer.
When I worked in the hospital, anyone who was placed on Prednisone (or any type of steroids) was placed on some form of gastric protective drug.
Your PCP can order something for you if you just tell him/her that you are on steroids and are having gastric pain.
Sharon, I don't know where you live. Depending on where you live, maybe you could get into a study trial.
If you go to this site: http://www.whatyousjo.com/
Luke has listed some studies that are starting or in progress. look at the right bottom part of the page and you will see a list with some links. There is a Rituximab/Belimumab study that is taking participants. Maybe you could get into that study. Click on it and it will take you to a site that gives you all of the details.
Most likely the reason the steroid causes drier eyes and mouth is that it can cause dehydration. This is because it causes the glucose level in the body to rise so the body tries to get rid of the glugose by weeing a lot. This quickly causes dehydration. For me, when I was on steroids for low platelets, the dehydration gave me cramps mostly in the feet which were agony.
There is always the possibility that there is some form of subclinical infection (viral is a strong possibility) underlying the symptoms you are trying to treat, and with a history of autoimmune disease, the logical choice was treating for AI. In a way it's a turnaround on the traditional path to diagnosis many AI patients face....treat for allergy, infection, nerves, anything but the AI. In your case is it possible treating for AI is aggravating something else, something non-inflammatory?
Also, I'm concerned about the "My rheumy said that if after 2 weeks I see no improvements I'm to stop". 20 mg over two weeks is usually sufficient dosing to require some form of weaning, although I've seen people come off that amount cold, with minimal side effects; kind of a grey area.
Jasper- Thanks, that's a great idea to protect the stomach. Nobody mentioned it to me before.
I have Omeprazole that was prescribed for something else. Would that help?
As far as trials, I'm not eligible since I do not have the right serology. Wish I were.
BurtToast- That's an interesting suggestion. It may indeed be from dehydration, though drinking more hasn't been helping.
I just can't figure out why it's not helping with the joint pains.
Linda- I've checked the viral option before, at least as far as the doctors would allow. I do know I have had active "Borderline" EBV for many years now for which there is no treatment. Steroids are not supposed to aggravate it though and from what I read are sometimes given to calm down its manifestations. I was also recently on a round of strong antibiotics for salivary gland infection which should have taken care of any underlying infection. I'm out of ideas as to what else could be going on.
I'm also concerned about stopping the Prednisone cold turkey. I don't feel it's helping at all at this point, but who knows what stopping it suddenly may trigger.
Sharon .....
I forgot you did not have any Sjogren's markers so are not eligible for studies.
Omeprazole is in the class of drug that would most likely be a drug that would work, but it is still prudent to discuss it with you PCP or let him know that is what you are doing. The doctor may want to know that you are experiencing gastric pain as a side effect and may want to order something different. "Omeprazole (Prilosec, Zegerid) belongs to group of drugs called proton pump inhibitors. It decreases the amount of acid produced in the stomach."
I agree with Linda about the concern of stopping Prednisone after 2 weeks. I was tapered after only 1 week (for poison ivy). And, I have been tapered every time I have used Prednsione for flares, even when the starting dose was only 10 mg (first taper) (all other tapers started at 20 mg). Stopping suddenly can cause withdrawal symptoms and can also cause adrenal problems.
Here is a blurb about steroid use, problems with sudden stoppage, and adverse effect.
http://www.medicinenet.com/steroid_withdrawal/article.htm
Thank you Jasper, my rheumy doesn't believe tapering is necessary after only 2 weeks,
but I have long lost faith in my doctors so I would prefer to taper.
Any suggestions how to do that?
I thought you were on a lower dose of Prednisone before trying this higher dose. Wouldn't that make your course longer than 2 weeks? Or was there a break in between?
I cannot give medical advice. I would suggest just telling your Rheumy you prefer to taper the Prednisone. Or, you could ask your PCP, although he/she may not want to interfere in another doctor's medication orders. Maybe if you just tell your Rheumy that you are very concerned about it, he/she will taper it.
There was a break of a few months in between my first trial and this current one.
I'm sure my rheumy would agree to taper it if I insisted, just having a difficult time moving up my appointment which is only scheduled for next month.
I've been taking 2.5 mg of Methylprednisolone, which is like Prednisone, for 3 years. Without it I go into a Flare state 48 hours after my IVIG, which I have every four weeks.
So this low dose stops inflammation which causes the Flare symptoms (profound fatigue, joint and other pain, and depression, AND for me, itching all over). I don't have a choice about this regular low dosage, because I must have the IVIG...
Before I started Medrol (trade name) Aleve was my pain relief, plus Cymbalta. With the Medrol, I begin to have stomach pain (pre-ulcer) so I finally gave up the Aleve. I now also take Gabapentin which dramatically alleviates almost all of my pain. Gabapentin works on the nerves of the brain, so the sensation of pain is stopped.
For those of us with complex Immune Disorders, our conditions and symptoms are at the frontier of medical knowledge. And with our sensitivities we are as unlike each other as we are unlike most of the population. This makes it very hard to find what works for us.
We read what others experience and know that we are not alone. But we can't really be sure what another person finds successful will be a success for us...........until we try.
By the way, my Immunologist is extraordinarily wary of the Medrol I'm taking, and for two weeks between infusions I actually take the 2.5 mg every other day.
I personally am not afraid of 2.5 mg daily...and at almost 75, with strong bones, I'm not worried about the long term effects.
I would recommend a course of use that involves tapering gradually. If you are taking only 10 mg, the taper is good, but not as important as what you must consider if you are taking 20 mg or more regularly.
I recently tapered off Gabapentin, and then endured 12 days of utter agony when completely off. It is said that the withdrawal is like withdrawing from alcohol or benzodiazepines.
Hugs, Elaine
Thanks Elaine, I've heard Gabapentin helps with neuropathy pains but do you know
if it does anything for arthritic pains?
For me, Sharon, when I take gabapentin most of my arthritic pain (I have severe osteoarthritis) is gone. Only the degenerative disk disease in my neck lingers. That is why it was so difficult to be off the Gabapentin. Not only was I trapped in my itching, burning, stinging, stabbing skin, each finger hurt, my shoulder and my long bones...everything.
I'm so happy to be back on Gabapentin. But it isn't a drug to be considered lightly.
Most people find relief immediately at a fairly low dose. If they are going to find relief.
Hugs, Elaine
I went to PennMed/Sjogrens Clinic for a second opinion and for what I termed "comprehensive treatment".
Labs and test were done. Some of which I had never had before.
Then an extended trial on prednisone. I felt as though the symptom switch had been turned to the off position and I was free ( I was still on my other medications though). Chronic inflammation had been interrupted and managed.
Then Methotrexate was started (which with your life goals at this time is not a fit).
Even though you are experiencing some negative symptoms, can you sit to focus and find any benefits from the prednisone trial?
I ask this because the prednisone will manage the 'inflammation".
Pain: I also have fibromyalgia. It was during the Prednsione trial that I actually felt the fibro pain alone and was shocked at the intensity. *It can stop me in my tracks.
"Fibromyalgia pain can appear in the joints and muscles, but fibromyalgia does not damage your joints the way that arthritis can. It also doesn't damage your muscles or other soft tissues, although it is known to intensify pain. This can also potentially worsen arthritis pain."
*A combination of Cymbalta and Neuotin (Gabapentin) and in my situation Topomax helps to manage my symptoms. I am on the far end of the spectrum.
Other problems. Many people who have fibromyalgia also may experience depression, headaches, and pain or cramping in the lower abdomen.
http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/symptoms/con-20019243
"May 16, 2013 - New findings have suggested that individuals who suffer from fibromyalgia (a chronic disorder that causes musculoskeletal pain and fatigue) may be more likely to experience dry eye symptoms. ... But not only do fibromyalgia patients complain of light sensitivity, they also regularly experience issues with sleep."
So the combination of SJS and Fibro can muddy the waters as symptoms overlay, others confusing. Treatment protocols are different for each and not "one size fits all". So I am hoping that the predinsone trial will help your Dr tease out inflammatory symptoms from ones due to other causes. In other words the prednisone trial is not a fail. But, a success in learning more about your unique situation, which symptoms are due to inflammation and which are not.
Sharon ..... Quietdynamics makes a good point. If the pain is from inflammation, it should abate or disappear with Prednisone.
My joint pain and stiffness has always disappeared on Prednisone therapy. The pain and stiffness return as the Prednsione wears off. In fact, when I get very high doses of IV Prednisone when I receive Rituximab infusions, my joints feel as good as the did when I was a child and adolescent. Not one single pain and no stiffness. Even with the Prednisone tapers that I have taken for flares, which is a lower dose, that joint pain and the stiffness pretty much disappear.
If your pain is not abating with Prednisone, then maybe it is from something other than inflammation.
The rule of thumb when taking prednisone is that if you take it 5 days in a row you can quit cold turkey. If you take it more than 5 days, generally more than 5 days would be 7, 10, 14 or however long the doctor orders for a burst and taper dosage.This also includes the daily dosage for the weeks, months and years that the prednisone is taken.
There are many ways to taper and every doctor has his favorite way to do it. If your doctor doesn't tell you how to do this or leaves it hanging so you have no clue what to do please call his office and find out. Stopping prednisone or any other oral steroid pill can be hazardous to your health. Reason being, when take oral steroids they build up a blood level and this gives the adrenal glands the idea that they don't have to produce the body's cortisol/steroids anymore. It makes the adrenal glands very lazy. Sooo, when we taper off of the steroids we are taking the body is kick started into producing them again. Good luck. Irish
I was on 20 mgs and now I'm on 19 mg. The doctor went back and forth re: my taper. First she said 15 one day and 20 another. I told her in the past, I seem to do better on a slow taper. Next thing I knew, I'm on 19 mgs. I'm fine with this for now.
20 mg isn't really that much and I think for me (and maybe a lot of folks) slower is usually better.
Right now I am tapering down from 30 mgm a day that I was on for 2 weeks. I am down to 15 mgm one day and 13 mgm the other, alternating. When I get down to zero mgm on the day of the 13 mgm then I am to start tapering down on the 15 to 10 mgm which I will stay at every other day. Yes, it's confusing.
I ended up in such a mess with my prednisone because of all the stress when my hubby was ill and dying. It made my myasthenia worse and every time I tried to taper I would have to go back up. I am now tapering 1 mgm every 2 weeks and when I get down to the 15 mgm every other day I probably will have to taper the one mgm every month or maybe every 2 months. I have a very steroid dependent body because of all the stress these past few years.
I was tapered down one time doing 5 mgm on alternating days every 2 weeks until I got to 10 mgm (the other day was at 20 ngm) and then I tapered 1 mgm to get down to zero on that day. My immunologists say that dropping a little faster will shock ones adrenal glands into kicking out the cortisone. However, my adrenal glands don't want to do that anymore. I am just hoping that I can get down to the 10 mgm every other day as my regular dose again. This is a safety precaution my neurologist uses for myasthenic patients in the event of a myasthenia crisis. Gives time to get to ER to get intubated.
The 10 mgm every other day gave me no noticeable side effects. I did develop type 2 diabetes but my younger sister developed the diabetes several years before me and she isn't on steroids. Diabetes runs in the family. If I had not had the stress of my husbands illness I doubt I would be so steroid dependent. Good luck to all. irish
Thanks for your input everybody.
Strangely eneough, my rheumy does not see the point of tapering because there are no benefits to maintain in my case, but I agree the adrenal issue definitely warrants tapering.
The fact that my symptoms did not respond to the Prednisone surprised my doctor as well.
There is definite inflammation going on as my finger joints are beoming deformed and I do respond well to a specific NSAID that contains Piroxicam. It's the only thing that controls the pain. Fibromyalgia was ruled out long ago as my symptoms became more specific. I can barely use my hands some days. My tears are also inflammatory but the Prednisone hasn't helped my eyes either.
What has it perhaps helped with? The itching and rashes and I seem to be able to tolerate eating a bit more than before. I can't say it hasn't helped at all with the arthritic pain, but definitely not nearly enough. I can't justify continuing it with such minute benefits, especially since it's drying me out even more and giving me strong stomach pains which I did not have before.
I may actually need a much higher dose of Prednisone to reap the full benefits, but the doctor doesn't want me on a higher dosage and I don't want to go any higher either.